Six years ago, I never imagined my family would be the subject of a documentary, but this Friday, Thank You for Playing, a film that documents the video game my family is making, will stage its world premiere at the Tribeca Film Festival in New York.
Back then, I was the mom of three regular kids. Like most normal families, we were so relieved to be average. We were thankful our children were healthy and proud that they were smart. We had a good life, and we had no idea what we were missing.
I thought I had compassion for families that were different. I saw children who struggled with developmental delays, illnesses, and handicaps and I felt sorry for them and their families, and I tried, for a few moments, to be a little extra thankful for our good fortune.
I didn’t know what it was like to go to a doctor with a list of horrifying questions and walk away more frustrated than when I arrived. I didn’t know what it was like to watch a child tell their mom “I love you” and burst into hot, uncontrollable tears because I had taken those words for granted once too. I didn’t know what it was like to be different, until we were.
When our one-year-old son, Joel, was diagnosed with a brain tumor it seemed impossible. We weren’t a cancer family. Families like that were different, alien somehow to the safe little existence we had carved out for ourselves. They had to be “other” because that made a “normal” family like mine immune from tragedy.
Suddenly, we were the ones agreeing to treatments with terrible side effects with desperate hope that something would work. The chemotherapy and radiation we submitted Joel to produced significant developmental delays. I began to wonder how long it would take him to catch up. Our life was on hold, but when treatment was over, we could all go back to being ordinary. Then they told us that Joel’s tumor had returned and he would die within weeks or months. Suddenly it didn’t matter that his eye was turned in, or that he couldn’t swallow solid food. It didn’t matter that he couldn’t walk and had never learned to talk. My son was dying, and I loved him.
Six years ago I thought I knew what it meant to love my children. When Joel was terminal I learned how to love someone so much it hurt. I thought I knew what it meant to be proud, but when Joel defied the odds, and lived long enough to take his very first steps at the age of 3, I felt a surge of pride like a tidal wave. I thought I had felt joy before, but making Joel—my slow, deaf, dying child, who still couldn’t talk to me—laugh was pure delight. We loved our very abnormal life, and we wanted to share it with as many people as possible.
So, we decided to make a video game about Joel living with terminal cancer and the kind of significant developmental delays and handicaps that make parents tremble, hug their children tighter, and thank God that they’d never had to go through anything so hard. Joel had made our family special, but describing it wasn’t enough. While we knew that a book about him could help you imagine it, and a film about Joel might let you see it, we decided to make a video game, as odd as it might seem, because it would let you experience what it was like to love him, to just sit and play with him. In a video game, you the player can take the time you have to take with a child like Joel—to just be with him and stop worrying about accomplishing things and just appreciate who he is and worry less about all the things he isn’t. My husband was a programmer and artist, so he could take all of our ideas for sharing this kind of hands-on experience and turn it into the little 1s and 0s that transport a player into a fantastical version of our life.
That Dragon, Cancer is a poetic, contemplative video game that brings players to tears at gaming conventions and causes strangers to hug each other and share their own stories. It is not what people expect from a video game, but something about this odd, sad video game moves people and inspires them. A man who lost his nephew the week before to cancer emailed us to ask if he could play our rough demo. We were hesitant—it can be intense—but he said it helped him, that he needed it. Doctors and nurses see its potential for training their medical staff because it helps them empathize with the patients and families they have dedicated their lives to serving.
When documentary filmmakers David Osit and Malika Zouhali-Worrall approached us about capturing the creation of the game and our daily life in a documentary film, we agreed. They got to know our kids and spent two years filming us. They were intrigued by what would cause us to turn our hard, painful story into a video game. I guess our life had never really seemed that hard to us. Of course it was challenging and tiring and frustrating at times, but the bulk of our family life felt exuberant and fun and sweet. Joel was a treasure, not a burden. As we crafted our story into an interactive experience and recorded the sound of our children playing together and modeled 3-D avatars of ourselves, our life felt full of purpose and hope. Joel kept defying the odds and it seemed like perhaps he really could beat “That Dragon, Cancer” once and for all.
When audiences have the opportunity to view screenings of Thank You for Playing at the Tribeca Film Festival, they may appreciate the triumph of the human spirit over adversity, or the creative and difficult journey of pushing the boundaries of an artistic medium, but I hope they also see what normal families miss, what I miss now that our family is so painfully ordinary once again: that children who need special help strengthen families, illuminating them like a brilliant lantern fueled by hope, joy, sacrifice, and love. So hug your children tighter, pray a thankful prayer that they are all ok, but I will watch the film and reminisce about the richest season of my life; the hard season where we couldn’t take anything for granted and every single day was precious.
The documentary film Thank You for Playing will premiere at the Tribeca Film Festival from Friday, April 17. The video game, That Dragon, Cancer, created by Ryan & Amy Green and Josh Larson, is set for release in fall 2015. More information can be found at thankyouforplayingfilm.com and thatdragoncancer.com.